UOAA Discussion Board

Hello, My name is Marc

in Jan. 2019 due to surgery complications when my bowel was hit and was leaking into my wound site, I had an colostomy placed. I had this for 4 months for the 'leak' to heal and was lucky to have it reversed. There were complications after the reversal in which there was a leak at the re-connection site and had to have a drain placed. It eventually (we thought) was completely healed.
At the end of July I had to have another surgery (stage 2 of the first) and once again started leaking feces into the wound site. I then had to have an ileostomy placed. So this one, I have had about 2.5 months. The surgeons say I can have this one reversed as well, only this time we're going to leave it in longer. As of right now, I still have leakage from the wound site, but it's a very small amount.

The ostomies are hard to deal with but not my biggest issue. I know I have it better than most that end up with ostomies. The fact that I know it's only temporary sets my mind at ease (for the most part). What I dislike the most is the procedures, we have to go through to get them and get them reversed. The CT Scans with contrast and scopes and stuff. I get sick thinking about the next time I have to go through all those steps, to even talk about reversal. When I had the ostomies placed.. I was so sick I didn't care what they did to me... as long as I was going to get better. It's so much harder to walk into a hospital, feeling 90% or more healthy, knowing what I'm about to endure.

I guess my question is... How do you do it?... How do you KNOW they're going to be sticking stuff up your rectum, filling your bowels etc and just sign up for that? I don't know about anyone else.. but I experience a LOT of pain with those procedures. I know it doesn't last long, and there are a lot worse things I could go through. Like I said before, I know I'm a lucky one to get this ileostomy reversed at some point.

I'm just looking for support and maybe ideas on how to "not worry" so much about what happens with the scans and scopes etc.

Any advise is welcome... I'm just glad I found this site and I'm happy to be here.

sincerely, Marc
Jamestown NY

Hi Marc: Welcome to our Discussion Board. It's been awhile since I've dealt with what you are contending with, but I do try to ask as many questions of both my doctors who order these tests & of the technicians who are actually performing them.

Do you have an ostomy nurse who has helped you? They are often your best source of information for your specific procedures. Also, many GI departments have qualified Nurse Practitioners who are another good source of help.

Hopefully someone on our board with more current experience with this will see your posts & provide some more input for you.

Wow, that is a hard question.

Some people have a belief in God and in prayer, and that seems to help them a lot. But what if you don't have that? I had that until I had lived with my disease for awhile, which destroyed any faith that I had.

It's been a while since I've had to have a procedure. My worst one was having my bladder filled with fluid to check for leaks and for fistulas. It was awful, just horrible, and painful to the extreme. The second time it was done, I knew what I was going to go through and that made it worse.

I think the anticipation might be worse that the actual procedure. We dread it for weeks, days, and hours. And after it's over, we know that there is a very good possibility that there might be another one in the future.

I don't have any good answers. It must be very personal and specific for each patient, how to handle it. I know calming medication can help, like Xanax. Just taking it sometimes one minute at a time, and enduring each minute, you know, breaking it down into little increments and completing each one, the way you do with a distasteful task.

I wanted you to know that we know what you are asking. We know how you are feeling. I'm sure others have their own ways of handling it that works, to some degree, anyway, for them. I'm sure others will post with suggestions. Be sure to tell the doctor about your concerns. I guess "one day at a time" is as good as any.

Thank you. Just knowing there are people that "get it" sure does help.

I "get it". I pretty well got used to it except for one thing.
A flex sig. Being awake and scoped. It's quick. But that one I didn't ever get used to.
Story. While I had my pouch. As for putting things up there.
My surgeon wanted to check me digitally. I asked her not to because I wouldn't be able to hold it. I was having huge problems with diarrhea.
Well. Thank goodness for stainless steel tables. I warned her. And I was not embarrassed one bit.
As for the scans I was injected in the arm with the stuff. But also had alot poked up me.
We all do. Just get used to it. Kinda. Still have the dread. Especially now. But they can't go the way they used too. Stoma.
I had a blockage they tried to find for 14 hours only to find out it was twisted. Man o man that was painful. The worst. But they poked my stoma forever while I squimed in pain.
They gave me meds but had to alternate two different ones. One worked instantly and one didn't work at all.
Like said above.
One day at a time.
It'll all seem like a dream when your done.
Try. Try not to think too much into it.
And like said above again.
Speak up to your Dr. After all they work for you.
You pay the bill. That was my angle.
Richard.
O.
I did it all to get myself better.
And I did. That's how and why I did all I did.